Tag: medical ethics

Last fall, it came to light that researchers had infected 700 Guatemalan soldiers, prisoners, and mental patients with syphilis in a US Public Health Service study between 1946 and 1948. The American government apologized for these “abhorrent” practices, and promised to investigate what had happened. A White House bioethics commission released its report on the study this Tuesday—and as horrific as the experiments sounded initially, the full story is even worse.

As more hospitals have begun using DNA testing to analyze babies with birth defects, doctors have occasionally discovered that a family’s little bundle of joy is also a product of incest. Since this is a new dilemma brought on by the spread of technology, doctors are now debating how to handle these incest surprises.

Geneticist Arthur Beaudet at Baylor College of Medicine addressed the issue yesterday in an article in the medical journal The Lancet. The genetic test, the single nucleotide polymorphism-based array, helps doctors identify missing genes (and can therefore help explain a child’s birth defect or disability)–but it also identifies swaths of identical DNA that a child may have inherited from two closely related parents.

In the few months that Baylor has been performing these detailed genetic tests, there have been fewer than 10 cases of consanguinity — the phenomenon of inheriting the same gene variations from two closely related people, said Dr. Arthur L. Beaudet, chairman of Baylor’s department of molecular and human genetics. However, wider use of such testing in children with disabilities is expected to identify additional cases of incestuous parentage. [ABC News]

Brian Deer’s article on BMJ is nothing short of a tour-de-force, and is a horrifying tale of how Wakefield allegedly falsified medical research deliberately while operating under a huge conflict of interest. Deer’s article is meticulously referenced and footnoted… but still, I know this won’t stop the antivaxxers.

Now, almost four decades later, a program once envisioned as a model for a national health-care system has evolved into a hulking monster. Taxpayers spend more than $20 billion a year to care for those on dialysis—about $77,000 per patient, more, by some accounts, than any other nation. Yet the United States continues to have one of the industrialized world’s highest mortality rates for dialysis care. Even taking into account differences in patient characteristics, studies suggest that if our system performed as well as Italy’s, or France’s, or Japan’s, thousands fewer kidney patients would die each year. [The Atlantic]

How did things go so awry? Medicare mandated coverage, the investigation finds, but it did not properly mandate how the clinics spent Medicare’s money.

The United States government officially apologized to Guatemala today for unethical medical experiments conducted by American researchers in the country over 60 years ago, in which unwitting subjects were deliberately infected with syphilis.

Secretary of State Hillary Rodham Clinton and Health and Human Services Secretary Kathleen Sebelius said they were, in their words, “outraged that such reprehensible research could could have occurred under the guise of public health.” [AP]

The study’s 696 participants were drawn from local prisons, army bases, and mental health facilities; many were paired with infected prostitutes from whom they unknowingly contracted the disease, while others had syphilis bacteria poured on to their penises, forearms, or faces. While the subjects were subsequently treated with penicillin, it’s not clear if the treatment was always adequate. The study was conducted by John Cutler, who was also involved in the Tuskegee Syphilis experiments and has since passed away.

Clinton and Sebelius’s statement didn’t mince words.

“We deeply regret that it happened and we apologize to all the individuals who were affected by such abhorrent research practices,” they said, announcing the launch of a thorough investigation into the specifics of the study. “The sexually transmitted disease inoculation study conducted from 1946-1948 in Guatemala was clearly unethical.” [AFP]

From 2002 until a lawsuit last year, the state of Texas took the small blood samples taken from newborns to screen for diseases, and saved them without the parents’ consent. Texas always said it did this for research purposes, of which there are many. But there was a wee detail about all this that didn’t come to light until an investigation published this week in the Texas Tribune. According to the Tribune, between 2003 and 2007, Texas quietly handed over 800 of those samples to the military for a project to create a database of mitochondrial DNA, which people inherit from their mother.

Like virtually every state, Texas routinely screens almost all newborns for rare diseases, collecting a few drops of blood at birth. In recent years many states, Texas included, have stored the samples and offered them up for research, mainly in pediatrics [ScienceInsider]. Because the samples are anonymous, researchers decided it was okay to use them without parental consent. However, the Tribune’s investigation uncovered emails showing Texas state officials publicized the use of DNA taken from newborns in studies on childhood disease, but deliberately dissuaded state employees from divulging the use of baby blood in establishing a DNA database [Popular Science].